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Testimony:
Before the Subcommittee on National Security, Emerging Threats, and
International Relations, Committee on Government Reform, House of
Representatives:
United States Government Accountability Office:
GAO:
For Release on Delivery Expected at 9:00 a.m. EDT in New York, New
York:
Saturday, September 10, 2005:
September 11:
Monitoring of World Trade Center Health Effects Has Progressed, but Not
for Federal Responders:
Statement of Cynthia A. Bascetta:
Director, Health Care:
GAO-05-1020T:
GAO Highlights:
Highlights of GAO-05-1020T, a testimony before the Subcommittee on
National Security, Emerging Threats, and International Relations,
Committee on Government Reform, House of Representatives:
Why GAO Did This Study:
After the 2001 attack on the World Trade Center (WTC), nearly 3,000
people died and an estimated 250,000 to 400,000 people who lived,
worked, or attended school in the vicinity were affected. An estimated
40,000 people who responded to the disaster—including New York City
Fire Department (FDNY) personnel and other government and private-
sector workers and volunteers—were exposed to numerous physical and
mental health hazards. Concerns remain about the long-term health
effects of the attack and about the nation’s capacity to plan for and
respond to both short- and long-term health effects in the event of a
future attack or other disaster.
Several federally funded programs have monitored the physical and
mental health effects of the WTC attack. These monitoring programs
include one-time screening programs and programs that also conduct
follow-up monitoring. GAO was asked to assess the progress of these
programs. GAO examined (1) federally funded programs implemented by
state and local government agencies or private institutions, (2)
federally administered programs to monitor the health of federal
workers who responded to the disaster in an official capacity, and (3)
lessons learned from WTC monitoring programs. GAO reviewed program
documents and interviewed federal, state, and local officials and
others involved in WTC monitoring programs.
What GAO Found:
Three federally funded monitoring programs implemented by state and
local governments or private organizations after the WTC attack have
provided initial medical examinations--and in some cases follow-up
examinations--to thousands of affected responders to screen for health
problems. For example, the FDNY medical monitoring program completed
initial screening for over 15,000 firefighters and emergency medical
service personnel, and the worker and volunteer program screened over
14,000 other responders. The New York State responder screening program
screened about 1,700 state responders before ending its examinations in
2003. Most state responders have not been informed that they are now
eligible to participate in the worker and volunteer program, and New
York State responders could miss the opportunity for continued
monitoring. These monitoring programs and the WTC Health Registry have
collected information that program officials believe researchers could
use to help better understand the health consequences of the attack and
improve treatment. Program officials expressed concern, however, that
current federal funding arrangements for long-term monitoring may be
too short to allow for identification of all future health effects.
In contrast to the progress made by other federally funded programs,
the Department of Health and Human Services’ (HHS) program to screen
federal workers who were sent by their agencies to respond to the WTC
disaster has accomplished little and is on hold. The program—which
started about one year later than other WTC monitoring
programs—completed screening of 394 of the estimated 10,000 federal
workers who responded in an official capacity to the disaster, but HHS
officials suspended examinations and the program has not screened
anyone since March 2004. The program’s limited activity and the
exclusion of federal workers from other monitoring programs because of
the assumption that they could receive screening examinations through
the HHS program may have resulted in many federal responders losing the
opportunity to identify and seek treatment for their WTC-related health
problems.
Officials involved in WTC health monitoring programs cited lessons from
their experiences that could help others who may be responsible for
designing and implementing health monitoring efforts that follow other
disasters, such as Hurricane Katrina. These include the need to quickly
identify and contact people affected by a disaster; to monitor for
mental health effects, as well as physical injuries and illnesses; and
to anticipate when designing disaster-related monitoring efforts that
there will likely be many people who require referrals for follow-up
care and that handling the referral process may require substantial
effort. HHS and New York State officials provided comments on the facts
contained in this testimony and GAO made changes as appropriate.
www.gao.gov/cgi-bin/getrpt?GAO-05-1020T.
To view the full product, including the scope and methodology, click on
the link above. For more information, contact Cynthia A. Bascetta at
(202) 512-7101 or bascettac@gao.gov.
[End of section]
Mr. Chairman and Members of the Subcommittee:
Thank you for inviting me to participate in today's hearing to discuss
issues related to the health effects that people continue to experience
in the aftermath of the September 11, 2001, terrorist attack on the
World Trade Center (WTC).[Footnote 1] After the collapse of the WTC
buildings, nearly 3,000 people died, and an estimated 250,000 to
400,000 people who lived, worked, or attended school in the vicinity
were affected. An estimated 40,000 people responded to the disaster,
including New York City Fire Department (FDNY) personnel and other
government and private-sector workers and volunteers from New York and
other locations across the nation. These responders,[Footnote 2] as
they took part in various rescue, recovery, and cleanup activities in
the days, weeks, and months following the attack, were exposed to
numerous physical hazards and environmental toxins due to the
destruction caused by the attack. The magnitude and unprecedented
nature of this event also exposed responders and many other people to
considerable psychological trauma.
Four years after the destruction of the WTC buildings, concerns remain
about the long-term physical and mental health effects of the attack.
Several recent studies of responders report that many of them have high
rates of physical and mental health symptoms, of which respiratory
problems are the most persistent physical effects.[Footnote 3] While
the nature and severity of a future terrorist attack cannot be
predicted, our prior work on the health effects of the WTC attack, the
2001 anthrax attacks, and bioterrorism preparedness, as well as reports
by other organizations, highlight the importance of ensuring the
nation's capacity to plan for and respond to the short-and long-term
health consequences likely to result in the event of a future attack or
other disaster, such as the destruction recently caused by Hurricane
Katrina.[Footnote 4]
As we testified in September 2004, in the aftermath of the WTC attack,
five key federally funded programs were implemented to assess the short-
term, and in some cases long-term, effects on people's physical and
mental health. These programs include the FDNY WTC Medical Monitoring
Program, WTC Medical Monitoring Program (worker and volunteer
program),[Footnote 5] New York State responder screening program, WTC
Health Registry, and the Department of Health and Human Services' (HHS)
WTC Federal Responder Screening Program. You asked us to provide
information on the progress of these monitoring programs.[Footnote 6]
My testimony today will focus on (1) progress made by federally funded
programs that are implemented by state and local government agencies or
private organizations and were established to monitor the health of
people in the aftermath of the attack, (2) progress made by federally
administered programs established to monitor the health of federal
workers who responded to the disaster in an official capacity, and (3)
lessons from WTC monitoring programs that could assist those who may be
responsible for future disaster-related health monitoring efforts.
To conduct this work, we obtained and reviewed program documents dating
from the beginning of the programs, including grantee progress reports,
budget documents, clinical protocols, health screening and other
assessment tools, and selected peer-reviewed articles based on
information collected by WTC monitoring programs. We also interviewed
federal, state, and local officials and others involved in
administering WTC monitoring programs, including officials from HHS and
the Department of Homeland Security (DHS);[Footnote 7] New York State
Department of Health; New York City Department of Health and Mental
Hygiene; and FDNY. Within HHS, we interviewed officials from the Agency
for Toxic Substances and Disease Registry (ATSDR); the Centers for
Disease Control and Prevention's (CDC) National Center for
Environmental Health and National Institute for Occupational Safety and
Health (NIOSH); Federal Occupational Health Services (FOH);[Footnote 8]
and the Office of Public Health Emergency Preparedness (OPHEP). We also
obtained information from the Department of Defense (DOD) and the
Department of Justice (DOJ). We interviewed medical professionals
affiliated with the New York University School of Medicine, FDNY's
Bureau of Health Services, Long Island Occupational and Environmental
Health Center, Mount Sinai-Irving J. Selikoff Center for Occupational
and Environmental Medicine, Mount Sinai School of Medicine Department
of Psychiatry, and the University of Medicine and Dentistry of New
Jersey's Robert Wood Johnson Medical School. We relied on data provided
by agency officials and contained in government publications and did
not independently verify the data we obtained. In our judgment the
reliability of the information we obtained was adequate for our
purposes. HHS and New York State officials provided comments on the
facts contained in this statement, and we made changes as appropriate.
We conducted our work from July 2005 through September 2005 in
accordance with generally accepted government auditing standards.
In summary, three federally funded programs implemented by state and
local governments or private organizations in the aftermath of the WTC
attack have provided initial medical examinations--and in some cases
follow-up examinations--to thousands of affected responders to screen
for health problems. For example, the FDNY program completed initial
screening for over 15,000 firefighters and emergency medical service
personnel, and the worker and volunteer program has screened over
14,000 other responders. The New York State program screened about
1,700 state responders before ending its screening examinations; in
general, it has not informed state responders that they are now
eligible to receive continued monitoring from the worker and volunteer
program. These three programs and the WTC Health Registry have
collected information that monitoring program officials believe could
be used by researchers to help better understand the health
consequences of the attack and improve treatment, such as by
identifying which types of treatment are effective for specific
conditions. Officials of programs that plan to conduct long-term health
monitoring are concerned that current federal funding arrangements may
be too short to allow for identification of all the health effects that
participants may eventually experience.
In contrast to the progress made by federally funded programs
implemented by state and local governments or private organizations,
the program that HHS implemented to screen federal workers who were
sent by their agencies to respond to the WTC disaster has accomplished
little. The program--which started later than other WTC monitoring
programs--completed screening of 394 of the estimated 10,000 federal
workers who responded in an official capacity to the disaster and were
not eligible for any other WTC health monitoring program. HHS placed
the program on hold in January 2004, when it stopped scheduling new
examinations. It has not screened anyone since March 2004. We
identified two federal agencies that, in the aftermath of the WTC
attack, have implemented programs to assess the health of their own
employees who responded to the disaster.
Officials involved in WTC health monitoring programs cited lessons from
their experiences that could help others who may be responsible for
designing and implementing disaster-related health monitoring efforts
in the future. These include the need to quickly identify and contact
people affected by a disaster; to monitor for mental health effects, as
well as the more obvious physical injuries and illnesses; and, when
developing health monitoring efforts in the wake of disasters, to
anticipate that there will likely be many people who require referrals
for further diagnostic and treatment services and that handling the
referral process may require a substantial level of effort.
Background:
When the WTC buildings collapsed on September 11, 2001, an estimated
250,000 to 400,000 people were immediately exposed to a noxious mixture
of dust, debris, smoke, and potentially toxic contaminants in the air
and on the ground, such as pulverized concrete, fibrous glass,
particulate matter, and asbestos. Those affected included people
residing, working, or attending school in the vicinity of the WTC and
thousands of emergency response workers. Also affected were the
estimated 40,000 responders who were involved in some capacity in the
days, weeks, and months that followed, including personnel from many
government agencies and private organizations as well as other workers
and volunteers.[Footnote 9]
A wide variety of physical and mental health effects have been observed
and reported among people who were involved in rescue, recovery, and
cleanup operations and among those who lived and worked in the vicinity
of the WTC.[Footnote 10] Physical health effects included injuries and
respiratory conditions, such as sinusitis, asthma, and a new syndrome
called WTC cough, which consists of persistent coughing accompanied by
severe respiratory symptoms. Almost all firefighters who responded to
the attack experienced respiratory effects, including WTC cough, and
hundreds had to end their firefighting careers due to WTC-related
respiratory illnesses. The most commonly reported mental health effects
among responders and others were symptoms associated with posttraumatic
stress disorder--an often debilitating disorder that can develop after
a person experiences or witnesses a traumatic event, and which may not
develop for months or years after the event. Behavioral effects such as
alcohol and tobacco use and difficulty coping with daily
responsibilities were also reported.
Several federally funded programs monitor the health of people who were
exposed to the WTC attack and its aftermath. The monitoring programs
vary in such aspects as eligibility requirements, methods used for
collecting information about people's health, and approaches for
offering referrals. Of the four programs that offer medical
examinations to WTC responders, the only one that is open to federal
workers who responded to the disaster in an official capacity is the
one implemented by HHS. (See table 1.) None of the monitoring programs
receives federal funds to provide clinical treatment for health
problems that are identified.
Table 1: Key Federally Funded WTC Health Monitoring Programs:
FDNY WTC Medical Monitoring Program[A];
Implementing agency or organization: FDNY Bureau of Health Services
(FDNY-BHS);
Federal administering agency: National Institute for Occupational
Safety and Health (NIOSH);
Eligible populations: Firefighters and emergency medical service
technicians;
Monitoring methods: Medical questionnaire and examination;
Treatment referral: Refers to FDNY-BHS.
WTC Medical Monitoring Program (worker and volunteer program)[A];
Implementing agency or organization: Five clinical centers, one of
which, the Mount Sinai-Irving J. Selikoff Center for Occupational and
Environmental Medicine, also serves as a data and coordination
center[B];
Federal administering agency: NIOSH;
Eligible populations: Rescue and recovery workers and volunteers,
except for federal workers who were official responders and New York
City (NYC) firefighters[C];
Monitoring methods: Medical questionnaire and examination;
Treatment referral: Refers to privately funded programs available to
responders; some privately funded treatment provided at the clinical
centers.
New York State responder screening program[D]; Implementing agency or
organization: New York State Department of Health;
Federal administering agency: National Center for Environmental Health;
Eligible populations: New York State employees and National Guard
personnel who responded to the WTC attack in an official capacity;
Monitoring methods: Medical questionnaire and examination;
Treatment referral: Instructed participants to see their primary care
physician or a specialist.
WTC Health Registry; Implementing agency or organization: NYC
Department of Health and Mental Hygiene;
Federal administering agency: Agency for Toxic Substances and Disease
Registry (ATSDR);
Eligible populations: Responders and people living or attending school
in the area of the WTC, or working or present in the vicinity on
September 11, 2001[E];
Monitoring methods: Telephone-based health and exposure interview;
Treatment referral: Provides information on where treatment can be
sought;[F] refers participants to LIFENETg for mental health services.
WTC Federal Responder Screening Program; Implementing agency or
organization: Department of Health and Human Services' (HHS) Office of
Public Health Emergency Preparedness;
Federal administering agency: HHS;
Eligible populations: Federal workers who responded to the WTC attack
in an official capacity;
Monitoring methods: Medical questionnaire and examination;
Treatment referral: Instructs participants to see their primary care
physician; in future, may refer participants with mental health
symptoms to a Federal Occupational Health Services employee assistance
program.
Source: GAO analysis of information from ATSDR, FDNY, Mount Sinai,
National Center for Environmental Health, New York City Department of
Health and Mental Hygiene, New York State Department of Health, and
NIOSH.
[A] The FDNY WTC Medical Monitoring Program and the WTC Medical
Monitoring Program constitute the WTC Responder Health Consortium.
NIOSH established the consortium in March 2004 to coordinate the health
monitoring of the two programs and to facilitate data sharing.
[B] The other clinical centers are located at the Long Island
Occupational and Environmental Health Center, the New York University
School of Medicine, the City University of New York's Queens College,
and the University of Medicine and Dentistry of New Jersey's Robert
Wood Johnson Medical School. The responsibilities of the Mount Sinai
data and coordination center include coordination of the clinical
centers, outreach and education, quality assurance, and data
management.
[C] The worker and volunteer program excludes responders who were paid
as federal workers or as NYC firefighters for their WTC work; these
employees are eligible for other programs. The program initially
excluded responders who were paid as New York State employees for their
WTC work and were eligible for the New York State responder screening
program. That program ended its screening examinations in November
2003, and as of February 2005, New York State responders became
eligible for the worker and volunteer program.
[D] The New York State program ended its screening examinations in
November 2003.
[E] Participants in the other WTC monitoring programs may also
participate in the registry program.
[F] The registry program provides enrollees with a resource guide of
occupational, respiratory, environmental, and mental health facilities
where they could seek treatment. Some of the services provided by these
facilities require payment, while others are free of charge.
[G] LIFENET is a 24-hour mental health information and referral service
provided by the New York State Office of Mental Health. In cases where
WTC Health Registry interviewers think a person is experiencing
moderate distress, they can immediately transfer the call so the person
can speak to a LIFENET counselor.
[End of table]
The majority of federal funding for these monitoring programs was
provided by DHS's Federal Emergency Management Agency (FEMA),[Footnote
11] as part of the approximately $8.8 billion in federal assistance
that the Congress appropriated to FEMA for response and recovery
activities after the WTC disaster.[Footnote 12] One fiscal year 2003
appropriation specifically authorized FEMA to use a portion of its WTC-
related funding for screening and long-term monitoring of emergency
services and rescue and recovery personnel.[Footnote 13] Generally,
however, FEMA may fund only short-term care after a disaster, such as
emergency medical services, and not ongoing clinical
treatment.[Footnote 14]
FEMA entered into interagency agreements with HHS to fund most of these
health monitoring programs. HHS is the designated lead agency for the
public health and medical support function under the National Response
Plan and is responsible for coordinating the medical resources of all
federal departments and agencies. HHS's Office of Public Health
Emergency Preparedness (OPHEP) coordinates and directs HHS's emergency
preparedness and response program.
Health Monitoring Programs Implemented by State and Local Governments
or Private Organizations Have Made Progress:
Three federally funded programs implemented by state and local
governments or private organizations--the FDNY WTC Medical Monitoring
Program, WTC Medical Monitoring Program (worker and volunteer program),
and New York State responder screening program--have made progress in
monitoring the physical and mental health of people affected by the WTC
attack. Federal employees who responded to the WTC disaster in an
official capacity were not eligible for these programs because it was
expected that another program would be developed for them. The New York
State program stopped providing examinations in November 2003, and
state workers are now eligible for initial or continued monitoring
through the worker and volunteer program. In general, the state program
has not informed state responders that they are eligible for the worker
and volunteer program. All three programs and the WTC Health Registry
have collected information that could contribute to better
understanding of the health consequences of the attack and improve
health care for affected individuals. Officials from the FDNY, worker
and volunteer, and WTC Health Registry programs are concerned that
federal funding for their programs could end before sufficient
monitoring occurs to identify all long-term health problems related to
the WTC disaster.
Three WTC Monitoring Programs Provided Medical Examinations to Identify
Responders' Health Problems:
Three federally funded programs implemented by state and local
governments or private organizations have provided medical examinations
to identify physical and mental health problems after the WTC attack.
(See table 2.) Two of these programs--the FDNY WTC Medical Monitoring
Program and the worker and volunteer program--are tracking the health
of WTC rescue, recovery, and cleanup workers and volunteers over time.
The third program, the New York State responder screening program,
offered one-time screening examinations to state employees, including
National Guard personnel, who participated in WTC rescue, recovery, and
cleanup work. Federal employees who responded to the WTC disaster in an
official capacity were not eligible for any of these programs because
it was expected that another program would be developed for them.
Table 2: Monitoring Activities and Associated Federal Funding for WTC
Monitoring Programs Implemented by State and Local Governments or
Private Organizations:
FDNY WTC Medical Monitoring Program;
Completed monitoring activities: Through June 2005, 15,284 firefighters
and emergency medical service technicians received screening
examinations, and 522 of these participants completed a follow-up
examination;
Planned monitoring activities: By June 2009, conduct three follow-up
examinations of each participant;
Federal funding[A]: $4.8 million was provided beginning in October 2001
for initial program; additional $25 million is available through June
2009.
WTC Medical Monitoring Program (worker and volunteer program);
Completed monitoring activities: Through June 2005, 14,110 people
received screening examinations, and 1,699 of these participants
completed a follow-up examination;
Planned monitoring activities: By July 2009, conduct three follow-up
examinations of each participant;
Federal funding[A]: $15.9 million was provided for initial program;[B]
additional $56 million is available through July 2009.
New York State responder screening program;
Completed monitoring activities: As of November 2003, 1,677 of
approximately 9,800 eligible employees and National Guard personnel
received screening examinations;
Planned monitoring activities: No further examinations are planned.
Participants are now eligible to participate in the worker and
volunteer program;
Federal funding[A]: $2.4 million was provided in January 2002 and is
available through January 2006.[C].
WTC Health Registry;
Completed monitoring activities: As of November 2004, the program
completed baseline data collection through interviews with the 71,437
people who enrolled in the registry;[D] registry officials estimate
that about 385,000 people had been eligible to enroll. In 2005, the
program updated contact information obtained at the time of enrollment;
Planned monitoring activities: In 2006, conduct follow-up survey of
participants; Registry officials are developing plans to track
participants' health through 2023;
Federal funding[A]: $20 million was provided beginning in July 2002,[E]
and additional funding of about $3 million has since been provided.f.
Source: GAO analysis of information from ATSDR, FDNY, Mount Sinai,
National Center for Environmental Health, New York City Department of
Health and Mental Hygiene, New York State Department of Health, and
NIOSH.
[A] Except as noted, FEMA provided these funds to the federal
administering agency for each monitoring program.
[B] $11.8 million of this amount was provided beginning in July 2002
through funds appropriated to CDC. An additional $4.1 million was
provided in fiscal year 2003 through an interagency agreement with
FEMA.
[C] The primary program activity since November 2003 has been data
analysis.
[D] Registry officials told us that final enrollment numbers may be
revised pending internal verification of data.
[E] The grant agreement is between ATSDR and the New York City
Department of Health and Mental Hygiene. However, ATSDR contracted
directly with Research Triangle Institute (RTI), a private not-for-
profit organization, for most of the work to establish the registry,
and about $16 million of the $20 million went directly from ATSDR to
RTI.
[F] The Environmental Protection Agency provided $2 million of these
funds. In addition, CDC and ATSDR provided $500,000 each.
[End of table]
The FDNY program completed initial screening for over 15,000
firefighters and emergency medical service personnel, and the worker
and volunteer program completed initial screening for over 14,000 other
responders. In both programs, screenings include physical examinations,
pulmonary function tests, blood and urine analysis, a chest X-ray, and
questionnaires on exposures and mental health issues. Both programs
have begun to conduct follow-up examinations of participants and
continue to accept new enrollees who desire initial screening. Current
plans are to conduct a total of three follow-up examinations for each
participant by 2009. As part of their federally funded activities, both
programs provide referrals for participants who require treatment. FDNY
employees and retirees can obtain treatment and counseling services
from the FDNY Bureau of Health Services and the FDNY Counseling
Services Unit, or they can use their health insurance to obtain
treatment and counseling services elsewhere. The worker and volunteer
program also provides referrals for its participants, including
referrals to programs funded by the American Red Cross and other
nonprofit organizations.
The New York State program screened about 1,700 of the estimated 9,800
state workers and National Guard personnel who responded to the WTC
disaster. Officials sent letters to these responders to inform them
about the program and their eligibility for it.[Footnote 15] For each
participant, the screening included a health and exposure questionnaire
and physical and pulmonary examinations. Participants who required
further evaluation or treatment after screening were told to follow up
with their personal physician or a specialist. The program stopped
screening participants in November 2003, in part because the number of
responders requesting examinations was dwindling, and no follow-up
examinations are planned.
In February 2005, worker and volunteer program officials began to allow
New York State responders to participate in that monitoring program.
The officials determined that the worker and volunteer program would
have sufficient funding to accommodate state workers who want to join
the program.[Footnote 16] The state program has not notified the
approximately 1,700 workers it has screened that they are now eligible
for continued monitoring from the worker and volunteer program. Program
officials relayed this development only to those state responders who
inquired about screening or monitoring examinations following the
decision to permit state responders to participate in the worker and
volunteer program. Worker and volunteer program officials told us that,
through August 2005, no state workers who responded to the WTC disaster
in an official capacity had received examinations from the worker and
volunteer program. According to worker and volunteer program officials,
any state worker screened by the state program would need a new
baseline examination through the worker and volunteer program because
the screening data collected by the state program differ from the data
collected in the worker and volunteer program. For example, the worker
and volunteer program offers a breathing test not provided by the state
program.
Programs Provide Data for WTC-Related Health Research:
In addition to providing medical examinations, these three programs--
the FDNY program, the worker and volunteer program, and the New York
State program--have collected information for use in scientific
research to better understand the health consequences of the WTC attack
and other disasters. A fourth program, the WTC Health Registry,
includes health and exposure information obtained through interviews
with participants; it is designed to track participants' health for 20
years and to provide data on the long-term health consequences of the
disaster (see table 2). Physicians who evaluate and treat WTC
responders told us they expect that research on health effects from the
disaster will not only help researchers understand the health
consequences, but also provide information on appropriate treatment
options for affected individuals.
Both the FDNY program and the worker and volunteer program have been
the basis for published research articles on the health of WTC
responders. For example, the FDNY program reported on the injuries and
illnesses experienced by firefighters and emergency medical service
workers after responding to the attack.[Footnote 17] In addition, the
worker and volunteer program published information on the physical and
mental health of responders in 2004.[Footnote 18] Officials from both
programs plan to publish additional findings as they track
participants' health over time. Although the New York State program has
stopped offering examinations, program officials are continuing to
analyze data from the program with plans for eventual publication.
The WTC Health Registry program has collected health information
through interviews with responders, people living or attending school
in the vicinity of the WTC site, and people working or present in the
vicinity on September 11, 2001. The registry completed enrollment and
conducted interviews with over 71,000 participants by November 2004.
Officials updated contact information for all participants in 2005, and
they plan to conduct a follow-up health survey of participants in early
2006. Registry officials would like to conduct subsequent follow-up
surveys periodically through about 2023--20 years after the program
began in 2003--but have not yet secured funding for long-term
monitoring.[Footnote 19]
The registry is designed to provide a basis for research to evaluate
the long-term health consequences of the disaster. It includes contact
information for people affected by the WTC attack, information on
individuals' experiences and exposures during the disaster, and
information on their health. In November 2004, registry officials
published preliminary results on the health status of registry
participants, and officials expect to submit several research papers
for publication within the next year. In addition, in May 2005,
registry officials published guidelines for allowing registry
information to be used in scientific research,[Footnote 20] and they
have since approved three proposals for external research projects that
use registry information. These proposals include two studies of
building evacuations and a study of psychological responses to
terrorism.
Program Officials Are Concerned That Current Federal Funding
Arrangements Will End before Needed Monitoring Is Complete:
Officials from the FDNY, worker and volunteer, and WTC Health Registry
programs are concerned that current federal funding arrangements for
programs designed to track participants' health over time may be too
short to allow for identification of all the health effects that may
eventually develop. ATSDR plans to fund the WTC Health Registry through
April 2008, and NIOSH plans to fund the FDNY program and the worker and
volunteer program through mid-2009. ATSDR's 5-year cooperative
agreement with the New York City Department of Health and Mental
Hygiene to support the WTC Health Registry went into effect April 30,
2003, and extends through April 29, 2008. Similarly, NIOSH awarded 5-
year grants in July 2004 to continue the FDNY and worker and volunteer
programs, which had begun in 2001 and 2002, respectively. Health
experts involved in these monitoring programs, however, cite the need
for long-term monitoring of affected groups because some possible
health effects, such as cancer, may not appear until decades after a
person has been exposed to a harmful agent. They also told us that
monitoring is important for identifying and assessing the occurrence of
newly identified conditions, such as WTC cough, and chronic conditions,
such as asthma.
HHS's Program for Screening Federal Responders Has Accomplished Little
and Is on Hold:
HHS's OPHEP established the WTC Federal Responder Screening Program to
provide medical screening examinations for an estimated 10,000 federal
workers who responded to the WTC disaster in an official capacity and
were not eligible for any other medical monitoring program. OPHEP did
not develop a comprehensive list of federal responders who were
eligible for the program. The program began in June 2003--about a year
later than other monitoring programs--and completed screenings for 394
workers. No examinations have occurred since March 2004, because
officials placed the program on hold, temporarily suspending new
examinations. The program is still on hold, and OPHEP officials are
taking actions intended to lead to restarting the program. We
identified two federal agencies that established screening programs for
their own personnel who responded to the disaster.
HHS Program Screened Few Federal Workers and Has Been on Hold for over
1 Year:
HHS's WTC Federal Responder Screening Program was established to
provide free voluntary medical screening examinations for an estimated
10,000 federal workers[Footnote 21] whom their agencies sent to respond
to the WTC disaster from September 11, 2001, through September 10,
2002, and who were not eligible for any other monitoring
program.[Footnote 22] FEMA provided $3.74 million through an
interagency agreement with HHS's OPHEP for the purpose of developing
and implementing the program. OPHEP entered into an agreement with
HHS's FOH to schedule and conduct the screening examinations.
The launching of the federal responder screening program lagged behind
the implementation of other federally funded monitoring programs for
WTC responders. For example, the medical screening program for New York
State employees and the worker and volunteer program started conducting
screening examinations in May 2002 and July 2002, respectively.
However, OPHEP did not launch its program until June 2003. (Figure 1
highlights key actions in developing and implementing the program.)
Figure 1: Timeline of Key Actions Related to WTC Federal Responder
Screening Program:
[See PDF for image]
[End of figure]
OPHEP did not develop a plan for identifying all federal agencies and
their personnel that responded to the WTC disaster or for contacting
all federal personnel eligible for the screening program. Although
OPHEP and FEMA developed a partial list of federal responders--
consisting primarily of HHS and FEMA personnel--OPHEP did not have a
comprehensive list of agencies and personnel, and so could not inform
all eligible federal responders about the WTC screening program. The
program's principal action to communicate with the federal responders
was to place program information and registration forms on FEMA's
National Disaster Medical System (NDMS) Web site.[Footnote 23]
The screening program had operated for about 6 months when OPHEP
officials decided in January 2004 to place it on hold by temporarily
suspending examinations. FOH officials told us that they completed 394
screening examinations[Footnote 24] from June 2003 through March
2004,[Footnote 25] with most completed by the end of September 2003.
According to FOH, a total of $177,967 was spent on
examinations.[Footnote 26] As of September 7, 2005, the program
remained on hold, with 37 people on the waiting list for
examinations,[Footnote 27] and OPHEP has not set a date for resuming
the examination process.
OPHEP officials told us that three operational issues contributed to
the decision to suspend the program. First, OPHEP could not inform all
eligible federal responders about the program because it lacked a
comprehensive list of eligible federal responders. Second, there were
concerns about what actions FOH clinicians could take when screening
examinations identified problems. Based on the examinations that had
been completed before the program was placed on hold, FOH clinicians
determined that many participants needed additional diagnostic testing
and follow-up care, primarily in the areas of respiratory functioning
and mental health. However, under the existing interagency agreement
there was no provision for providing follow-up care and no direction
for clinicians on how to handle the provision of further diagnostic
tests, treatment, or referrals. FOH officials told us that they were
concerned about continuing to provide screening examinations without
the ability to provide participants with additional needed services.
Third, although the screening program had been established to provide
examinations to all federal responders regardless of their current
federal employment status, HHS officials told us that the department
determined that FOH does not have the authority to provide examinations
to people who are no longer in federal service. OPHEP officials told us
in September 2005 that they were exploring avenues for providing
examinations to federal responders who were no longer federal
employees.
OPHEP has begun to take action to prepare for offering examinations
again. In April 2005, program officials enlisted the assistance of
ATSDR--which had successfully developed the WTC Health Registry--to
help develop the needed lists of federal agencies and personnel for the
federal responder program. OPHEP executed an agreement with ATSDR that
allocated about $491,000 from the program's remaining allocation from
FEMA to ATSDR.[Footnote 28] Under this agreement, which is scheduled to
run through April 2006, ATSDR is working with the contractor it used to
develop the WTC Health Registry to develop a new registration Web site,
develop and implement a comprehensive recruitment and enrollment plan
for current and former federal workers, and establish a database
containing the names of federal responders. On September 1, 2005, OPHEP
sent a letter to 51 federal agencies requesting them to provide ATSDR's
contractor with contact information on the employees they sent to
respond to the WTC disaster.
In July 2005, OPHEP and FOH executed a new agreement so that when the
program begins examining responders again, FOH clinicians will be able
to make referrals for follow-up care. For example, they will be able to
refer participants with mental health symptoms to an FOH employee
assistance program for a telephone assessment. If appropriate, the
participant will be referred to an employee assistance program
counselor for up to six in-person sessions. If the assessment indicates
that longer treatment is necessary, the participant instead will be
advised to use health insurance to obtain care or to contact a local
Department of Labor Office of Workers' Compensation to file a claim,
receive further evaluation, and possibly obtain compensation for mental
health services. The new agreement between OPHEP and FOH also will
allow FOH clinicians to order additional clinical tests, such as
special pulmonary and breathing tests.
Two Federal Agencies Established Their Own Screening Programs:
We identified two federal agencies that established medical screening
programs to assess the health of the personnel they had sent to respond
to the WTC disaster. One agency, the Army, established two screening
programs--one specifically for Army Corps of Engineers personnel and
one that also included other Army responders. The Army Corps of
Engineers established a voluntary program to assess the health of 356
employees it had sent to respond to the disaster.[Footnote 29] The
program, initiated in November 2001, consists of sending employees an
initial medical screening questionnaire covering physical health
issues.[Footnote 30] If questionnaire results indicate symptoms or
concerns that need further evaluation, the employee is offered a
medical examination.[Footnote 31] As of August 2004, 92 Corps of
Engineers employees had participated in the program, with 40 receiving
follow-up examinations. The Army's Center for Health Promotion and
Preventive Medicine initiated a program--the World Trade Center Support
Health Assessment Survey--in January 2002. It was designed as a
voluntary medical screening for Army military and civilian personnel,
including contractors. From January 2002 through September 2003,
questionnaires were sent to 256 employees.[Footnote 32] According to
DOD, 162 employees completed and returned their questionnaires. In
addition, the U.S. Marshals Service, within the Department of Justice,
modified an existing agreement with FOH in 2003 for FOH to screen
approximately 200 U.S. Marshals Service employees assigned to the WTC
or Pentagon recovery sites. The one-time assessment includes a
screening questionnaire and a medical examination.[Footnote 33] FOH
officials said that as of August 2005, 88 of the 200 U.S. Marshals
Service employees had requested and obtained examinations.[Footnote 34]
Lessons from WTC Health Monitoring Programs Could Assist Future
Monitoring Efforts:
Officials involved in the WTC health monitoring programs implemented by
state and local governments or private organizations--including
officials from the federal administering agencies--derived lessons from
their experiences that could help officials design such programs in the
future. They include the need to quickly identify and contact people
affected by a disaster, the value of a centrally coordinated approach
for assessing individuals' health, the importance of monitoring both
physical and mental health, and the need to plan for providing
referrals for treatment when screening examinations identify health
problems.
Officials involved in the monitoring programs emphasized the importance
of quickly identifying and contacting people affected by a disaster.
They said that potential monitoring program participants can become
more difficult to locate as time passes.[Footnote 35] In addition,
potential participants' ability to recall the events of a disaster may
decrease over time, making it more difficult to collect accurate
information about their experiences and health. However, the time it
takes to design, fund, approve, and implement monitoring programs can
lead to delays in contacting the people who were affected. For example,
the WTC Health Registry received funding in July 2002 but did not begin
collecting data until September 2003--2 years after the disaster. From
July 2002 through September 2003, the program's activities included
developing the registry protocol, testing the questionnaire, and
obtaining approval from institutional review boards and the federal
Office of Management and Budget.[Footnote 36] This delayed the
collection of information from participants. To prevent similar delays
during the response to future disasters, ATSDR officials are developing
a questionnaire, known as the Rapid Response Registry, to allow
officials to identify and locate potentially affected individuals
immediately after a disaster and collect basic preliminary information,
such as their current contact information and their location during the
disaster.[Footnote 37] ATSDR officials expect that using this
instrument would reduce delays in collecting time-sensitive information
while officials take the time necessary to develop a monitoring program
for disaster-related health effects.
Furthermore, officials told us that health monitoring for future
disasters could benefit from additional centrally coordinated planning.
Such planning could facilitate the collection of compatible data among
monitoring efforts, to the extent that this is appropriate. Collecting
compatible data could allow information from different programs to be
integrated and contribute to improved data analysis and more useful
research. In addition, centrally coordinated planning could help
officials determine whether separate programs are necessary to serve
different groups of people. For example, worker and volunteer program
officials indicated that it might have been possible for that program
to serve federal workers who responded to the disaster in an official
capacity, which might have eliminated the need to organize and
administer a separate program for them.
Officials also stated that screening and monitoring programs should be
comprehensive, encompassing both physical and mental health
evaluations. Worker and volunteer medical monitoring program officials
told us that the initial planning for the program had focused primarily
on screening participants' physical health, and that they did not
originally budget for extensive mental health screening. Subsequently,
they recognized a need for more extensive mental health screening,
including greater participation of mental health professionals, but the
program's federal funding was not sufficient to cover such screening.
By collaborating with the Mount Sinai School of Medicine Department of
Psychiatry, program officials were able to obtain philanthropic funding
to develop a more comprehensive mental health questionnaire, provide on-
site psychiatric screening, and, when necessary, provide more extensive
evaluations.
Many participants in the monitoring programs required additional
testing or needed treatment for health problems that were identified
during screening examinations. Officials told us that finding treatment
sources for such participants is an important, but challenging, part of
the programs' responsibility. For example, officials from the worker
and volunteer program stated that identifying providers available to
treat participants became a major part of their operations, and was
especially difficult when participants lacked health insurance. The
officials said that planning for future monitoring programs should
include a determination of how best to help participants obtain needed
treatment.
Concluding Observations:
Federally funded programs implemented by state and local governments or
private organizations to monitor the health effects of the WTC attack
on thousands of people who responded to the disaster have made
progress. However, the program HHS established to screen the federal
employees whose agencies sent them to the WTC after the attack has
accomplished little, completing screenings of fewer than 400 of the
thousands of federal responders. Moreover, no examinations have
occurred for over a year. Because of this program's limited activity,
and the inability of federal workers to participate in other monitoring
programs because of the assumption that they would have the opportunity
to receive screening examinations through the HHS program, many federal
responders may not have had an opportunity to identify and seek
treatment for health problems related to the WTC disaster. For state
responders, the opportunity for continued monitoring could be lost if
they are not informed that they are now eligible to participate in the
worker and volunteer program.
Based on their experiences, officials involved in the monitoring
programs have made a number of useful observations that will apply to
future terrorist attacks and natural disasters such as Hurricane
Katrina. For example, screening for mental as well as physical health
problems in New Orleans and along the Gulf Coast will be critical to
the recovery of survivors of Hurricane Katrina and the responders to
the disaster. The federal, state, and local government officials who
are responsible for planning and implementing health monitoring
activities in the aftermath of disasters could improve their
effectiveness by incorporating the lessons learned from the World Trade
Center experience.
Mr. Chairman, this completes my prepared remarks. I would be happy to
respond to any questions you or other Members of the Subcommittee may
have at this time.
Contact and Acknowledgments:
For further information about this testimony, please contact Cynthia A.
Bascetta at (202) 512-7101 or bascettac@gao.gov. Contact points for our
Offices of Congressional Relations and Public Affairs may be found on
the last page of this statement. Helene F. Toiv, Assistant Director;
George H. Bogart; Alice L. London; Roseanne Price; and William R.
Simerl made key contributions to this statement.
[End of section]
Appendix I: Abbreviations:
ATSDR: Agency for Toxic Substances and Disease Registry:
CDC: Centers for Disease Control and Prevention:
DHS: Department of Homeland Security:
DOD: Department of Defense:
DOJ: Department of Justice:
FDNY: New York City Fire Department:
FDNY-BHS: New York City Fire Department Bureau of Health Services:
FEMA: Federal Emergency Management Agency:
FOH: Federal Occupational Health Services:
HHS: Department of Health and Human Services:
NDMS: National Disaster Medical System:
NIOSH: National Institute for Occupational Safety and Health:
NYC: New York City:
OPHEP: Office of Public Health Emergency Preparedness:
RTI: Research Triangle Institute:
WTC: World Trade Center:
[End of section]
Appendix II: Government Agencies That Sent Responders Following the
World Trade Center Attack:
Through our work, we identified the following agencies that sent
employees to respond to the World Trade Center attack of September 11,
2001.
Federal Agencies:
Department of Defense:
Department of Energy:
Department of Health and Human Services: Agency for Toxic Substances
and Disease Registry:
Department of Health and Human Services: Centers for Disease Control
and Prevention:
Department of Health and Human Services: National Institutes of Health:
Department of Health and Human Services: Substance Abuse and Mental
Health Services Administration:
Department of Homeland Security: Federal Emergency Management
Agency[Footnote 38]:
Department of Homeland Security: U.S. Coast Guard[Footnote 39]:
Department of the Interior: National Park Service:
Department of Justice: Federal Bureau of Investigation:
Department of Justice: U.S. Marshals Service:
Department of Labor: Occupational Safety and Health Administration
Environmental Protection Agency:
New York State Agencies:
Department of Environmental Conservation:
Department of Health:
Division of Military and Naval Affairs:
Emergency Management Office:
Office of Mental Health:
New York City Agencies:
Department of Design and Construction:
Department of Environmental Protection:
Department of Health and Mental Hygiene:
Department of Sanitation:
Fire Department:
Metropolitan Transportation Authority:
Office of Emergency Management:
Police Department:
[End of section]
FOOTNOTES
[1] A list of abbreviations used in this testimony is in app. I.
[2] In this testimony, the term "responders" refers to anyone involved
in rescue, recovery, or cleanup activities at or near the vicinity of
the WTC site and Staten Island Fresh Kills landfill (the off-site
location of the WTC recovery operation).
[3] See, for example, Centers for Disease Control and Prevention,
"Mental Health Status of World Trade Center Rescue and Recovery Workers
and Volunteers--New York City, July 2002-August 2004," Morbidity and
Mortality Weekly Report, vol. 53 (2004); Centers for Disease Control
and Prevention, "Physical Health Status of World Trade Center Rescue
and Recovery Workers and Volunteers--New York City, July 2002-August
2004," Morbidity and Mortality Weekly Report, vol. 53 (2004); and
Gisela I. Banauch and others, "Bronchial Hyperreactivity and Other
Inhalation Lung Injuries in Rescue/Recovery Workers after the World
Trade Center Collapse," Critical Care Medicine, vol. 33, no. 1 (2005).
[4] See, for example, GAO, September 11: Health Effects in the
Aftermath of the World Trade Center Attack, GAO-04-1068T (Washington,
D.C.: Sept. 8, 2004); GAO, Bioterrorism: Public Health Response to
Anthrax Incidents of 2001, GAO-04-152 (Washington, D.C.: Oct. 15,
2003); GAO, Public Health Preparedness: Response Capacity Improving,
but Much Remains to Be Accomplished, GAO-04-458T (Washington, D.C.:
Feb. 12, 2004); and Institute of Medicine, Preparing for the
Psychological Consequences of Terrorism: A Public Health Strategy
(Washington, D.C.: 2003).
[5] This program was formerly known as the WTC Worker and Volunteer
Medical Screening Program. In this testimony, we refer to the program
as the worker and volunteer program.
[6] In this testimony, we use the term monitoring program to refer to
both one-time screening programs and programs that include initial
screening and periodic follow-up monitoring.
[7] The DHS officials we spoke with were from the Federal Emergency
Management Agency, which became part of DHS in March 2003.
[8] FOH is a part of HHS's Program Support Center.
[9] The responders included firefighters, law enforcement officers,
emergency medical technicians and paramedics, morticians, health care
professionals, and other workers and volunteers, including those in the
construction and ironwork trades, heavy equipment operators, mechanics,
engineers, truck drivers, carpenters, day laborers, and
telecommunications workers. Numerous federal, state, and New York City
agencies sent personnel to respond to the WTC disaster (see app. II).
[10] GAO-04-1068T.
[11] FEMA is the agency responsible for coordinating federal disaster
response efforts under the National Response Plan.
[12] FEMA provided funds to HHS to support screening and long-term
monitoring efforts from funds appropriated for disaster relief and
emergency response to the September 11, 2001, terrorist attacks. See
Consolidated Appropriations Resolution, 2003, Pub. L. No. 108-7, 117
Stat. 11, 517; 2002 Supplemental Appropriations Act for Further
Recovery from and Response to Terrorist Attacks on the United States,
Pub. L. No. 107-206, 116 Stat. 820, 894; Department of Defense and
Emergency Supplemental Appropriations for Recovery from and Response to
Terrorist Attacks on the United States Act, 2002, Pub. L. No. 107-117,
115 Stat. 2230, 2338; and 2001 Emergency Supplemental Appropriations
Act for Recovery from and Response to Terrorist Attacks on the United
States, Pub. L. No. 107-38, 115 Stat. 220-221.
[13] Pub. L. No. 108-7.
[14] The Robert T. Stafford Disaster Relief and Emergency Assistance
Act, as amended, authorizes FEMA to, among other things, make
appropriated funds available for disaster relief and emergency
assistance. Pub. L. No. 93-288, 88 Stat. 143 (1974), as amended. The
Stafford Act does not specifically authorize ongoing clinical
treatment.
[15] When state officials contacted the estimated 9,800 state
responders, some of them informed the program that they were not
interested in participating. Officials sent follow-up letters to state
employees who did not respond to the initial mailing. National Guard
personnel were sent only an initial letter.
[16] As of September 1, 2005, the worker and volunteer program was in
the process of establishing a network of providers to serve responders
outside the New York City metropolitan area. State responders had been
eligible for monitoring at existing New York City area clinics since
February 2005, but they will not be able to visit providers in Albany
and other areas of New York until the network is established.
[17] See, for example, CDC, "Injuries and Illnesses among New York City
Fire Department Rescue Workers after Responding to the World Trade
Center Attacks," Morbidity and Mortality Weekly Report, vol. 51 (2002),
and Elizabeth M. Fireman and others, "Induced Sputum Assessment in NYC
Firefighters Exposed to World Trade Center Dust," Environmental Health
Perspectives, vol. 112 (2004).
[18] CDC, Morbidity and Mortality Weekly Report, vol. 53, p. 807, and
CDC, Morbidity and Mortality Weekly Report, vol. 53, p. 812.
[19] Program officials told us that the registry was designed as a 20-
year program because most long-term health effects that might result
from the WTC disaster would likely begin to appear in the population
within that period of time.
[20] Under the guidelines, a review committee consisting of public
health scientists and stakeholder representatives evaluates each
proposed research project based on criteria such as the proposal's
scientific and technical merit, funding, and contribution to a
community or individuals.
[21] For this program, a federal worker is defined as being either a
permanent, temporary, or intermittent federal employee.
[22] According to a FEMA official, federal workers who did not receive
official orders from their agencies to respond to the WTC disaster are
not eligible for this program. According to an official of the worker
and volunteer program, federal workers who volunteered on their own in
the aftermath of the disaster were eligible to participate in that
screening program.
[23] NDMS provides medical care to victims and responders to domestic
disaster, including acts of terrorism and natural disasters. According
to HHS officials, when NDMS was transferred to FEMA in 2003 as part of
the formation of DHS, key NDMS staff involved in the initial planning
of the screening program were also transferred. During the transition
period, these NDMS staff continued to carry out some tasks related to
the screening program, including working to identify agencies that had
sent employees to the WTC disaster, developing a list of federal
responders, and placing information about the program on the NDMS Web
site. Officials said that overall program management responsibility and
funding remained with HHS.
[24] FOH officials told us that although FOH clinicians had seen
approximately 460 federal personnel, not all of them completed the
entire examination process.
[25] FOH continued to schedule and conduct examinations for those
people who had requested an examination before the program was placed
on hold in January 2004.
[26] FOH officials told us that this amount includes spending on the
394 completed examinations and on examinations that were not completed.
[27] FOH officials told us that these 37 applications were received
after the screening program was placed on hold in January 2004.
[28] According to OPHEP, as of August 22, 2005, about $3 million of the
original $3.74 million allocated by FEMA for this screening program
remained.
[29] The screening program has no closing date, and employees can
request a screening examination at any time.
[30] The questionnaire collects information on prior and WTC-related
occupational exposures and prior and current physical health status.
[31] The medical examination includes a comprehensive history and
physical examination, chest X-ray, and pulmonary function, blood, and
urine tests.
[32] The Army's questionnaire was distributed to active-duty service
members, activated members of the Reserves and National Guard, civilian
employees, and civilian contractors. These included 125 New Jersey Army
National Guard members. The 474 active-duty members of the New York
Army National Guard who responded to the WTC disaster were not included
due to their eligibility to participate in the medical screening
program established for New York State workers.
[33] The medical examination includes an occupational exposure history
and physical examination, chest X-ray, blood and urine tests, pulmonary
function test, audiogram, and electrocardiogram.
[34] FOH officials told us that under the terms of the agreement,
eligible employees can still request a screening examination.
[35] The extent of the challenge of locating potential participants
varied among WTC monitoring programs, depending on the population
involved. For example, FDNY had contact information for all potential
participants in its monitoring program because they were employed by
FDNY during or after the disaster. In contrast, the worker and
volunteer program and the WTC Health Registry had to expend
considerable effort to identify people who were eligible to participate
and inform them about the programs.
[36] Institutional review boards are groups that have been formally
designated to review and monitor biomedical research involving human
subjects. Under the Paperwork Reduction Act, agencies are required to
submit proposed information collections to the Office of Management and
Budget for approval. See, 44 U.S.C. § 3507.
[37] The Rapid Response Registry has been approved by CDC's
Institutional Review Board and has undergone initial review by the
Office of Management and Budget.
[38] At the time of the World Trade Center attack, the Federal
Emergency Management Agency was an independent agency.
[39] At the time of the World Trade Center attack, the U.S. Coast Guard
was in the Department of Transportation.